- Ectodermal Dysplasia Society - Information about the organization as well as the ED condition. Includes links, news articles and contact details.
- National Foundation for Ectodermal Dysplasia - ED organization based in North America offering information/advice to individuals and supporting scientific research. Includes a newsletter, publications, FAQs and a list of services.
- NORD: Ectodermal Dysplasias - Offers synonyms, a general discussion and resources.
- The Andy Fund - Describes the health condition of a boy who was born with ectodermal dysplasia with immune deficiency caused by a mutation on the fourth part of the NEMO gene.
- The CaF Directory - Information about the ectodermal dysplasia disorders, the inheritance patterns and pre-natal diagnosing.
